Full-Blown Agony: My Fight With the Puzzling Suffering of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with severe discomfort behind one eye that lasts for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.
Ancient healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only formally classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.
Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
